Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

@sadragliz Welcome to the DIPNECH club. Are you being followed by a NETs team?

https://connect.mayoclinic.org/comment/1288226/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

Hello @mimi206 and welcome to the DIPNECH support group on Mayo Connect, I would like to...

https://connect.mayoclinic.org/comment/1250451/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hello,I have a 1.4 cm Typical Carcinoid Tumor n 10 DIPNECH nodules 1 is 5.5mm. I...

https://connect.mayoclinic.org/comment/1006873/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2024

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

@mlbschuler @grec I have both DIPNECH and lung NETs and yes, it is scary to have...

https://connect.mayoclinic.org/comment/1004928/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

@rogo, I believe you are referring to lung carcinoid tumors with Diffuse Idiopathic Pulmonary NeuroEndocrine Cell...

https://connect.mayoclinic.org/comment/1070380/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

DIPNECH means there are too many neuroendocrine cells growing abnormally in the lining of your small...

https://connect.mayoclinic.org/comment/1411349/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2025

@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH...

https://connect.mayoclinic.org/comment/1054381/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

seems to have a lot of people with DIPNECH like me so why doesnt anyone know...

https://connect.mayoclinic.org/comment/1242988/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

I have breast cancer as well as lung NETs and DIPNECH. My breast cancer is unrelated;...

https://connect.mayoclinic.org/comment/1206124/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

No contrast. I am 2 1/2 yrs post op from lobectomy with typical NETs, and dx...

https://connect.mayoclinic.org/comment/1522217/

Discussion: What is the surveillance protocol for typical pulmonary NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8 8:08am

There are only about 300 documented cases of DIPNECH which is why most doctors have never...

https://connect.mayoclinic.org/comment/1205680/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

Hello @spaztwobe and welcome to the NETs support group. I see that @dbamos1945 and @tstern7 have...

https://connect.mayoclinic.org/comment/1315211/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2025

@ggiinnaa I wonder if you also have DIPNECH like I do that might explain the other...

https://connect.mayoclinic.org/comment/1441023/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

There are many other threads going on lung NETs and DIPNECH. If you use the search...

https://connect.mayoclinic.org/comment/1285781/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

Hello @sadragliz and welcome to the NETs support group on Mayo Connect. The reasons why a...

https://connect.mayoclinic.org/comment/1243830/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23, 2025

Hello @lrittmiller and welcome to the NETs support group on Mayo Connect. We have many members...

https://connect.mayoclinic.org/comment/1107836/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Hi, another DIPNECH ‘club’ member here. My diagnosis was late 2023 and I had an ablation...

https://connect.mayoclinic.org/comment/1392689/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Jan, sorry to hear about all of your health challenges. Sometimes DIPNECH is misdiagnosed as asthma...

https://connect.mayoclinic.org/comment/1222295/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2025

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